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A father of two who is desperate for a life-saving kidney transplant has spoken movingly of his daily battle with his health.

Simon Howell, a former doctor, is gradually deteriorating and knows without a donor he won't live to see his children Sarah, 8, and James, three, reach their teens.

The 41-year-old is one of 7,000 people currently on the UK’s transplant waiting list and faces a daily battle supported by his wife Anita, also 41.

In the last ten years 49,000 people in the UK have endured the wait for an organ transplant and over 6,000, including 270 children, have died before receiving the transplant they desperately needed.

Of the almost 7,000 patients 30 per cent have been waiting more than two years. More than 500 of them have been waiting longer than five years – that’s over 1,800 days each.

Simon was born with a serious kidney condition, renal dysplasia, and had his first kidney transplant in 2005 thanks to his mum offering to be a living donor.

Unfortunately, in 2009, the kidney failed. Simon was added to the transplant waiting list for a new kidney and has been waiting longer than six years already.

Simon allowed cameras to record the reality of just one of the many days he has spent waiting for a suitable organ to highlight just how difficult life is on the transplant waiting list.

Loving: Simon with wife Anita and their two children

Here is his story:

The alarm goes off to get me up so I can help get the kids to school. Luckily, I feel well enough to sit up and get ready to get out of bed. There's a mild headache, and my heart is pounding away at more than 100 beats per minute with the strain of waking, but I'm doing it, so this morning is a good morning.

You see, I've been on dialysis for five years now. I was born with kidneys that were slowly declining, but I had thought I would be in my fifties before I ran into problems. Time enough to have a family, become a consultant and settle down into life.

I was 30 and at work (as a doctor) when I felt particularly ill. I did my own blood work. I saw the results and knew that the end had come for my kidneys. I saw my kidney specialist and talked about needing dialysis while waiting for a transplant. My parents jumped at the chance to help, and just less than a year later I had a new kidney from my mother.

From no particular fault of anybody’s, it failed within four years.

Thoughtful: Simon is in desperate need of a new kidney

I'm currently staying alive using a method called Peritoneal Dialysis. The first thing I'll do now that I'm up is set up a tray of medical paraphernalia, get a 2 litre bag of prescribed fluid out of the body temperature heater, and go to scrub up like a surgeon for 2 minutes. Sometimes, I'm so fatigued that just standing at a wash basin for 2 minutes is more than enough.

Hands cleaned, I go through the procedure to connect myself to the fluid bag via a permanent catheter in my abdomen. It's unsightly, but it keeps me alive at the moment. I then drain out the two litres of fluid that has dwelled inside me all night. Along with it drains away potassium and urates and other toxins that are building up in my bloodstream now that my kidneys cannot remove them. It's not a perfect replacement, and I still have to watch what I eat. It's typical that chocolate is one of those things high in potassium.

I go through the procedure quickly, but the draining away still takes 15-20 minutes. Long enough for me to calculate that this must be around the 6,700th time I've done this. And I'll do it another four times today. And tomorrow. And the day after that, and every day that I want to live through. Then it's 15-20 minutes more as I drain a fresh bag of fluid into me, to dwell in for 4-6 hours. That counts as one exchange. Now I'm free to join my family, until the next one is due.

That two litres inside me is unsightly too, and at times uncomfortable. Painful on occasions.

If it turns out to be a great day, I'll spend my limited energy taking the kids to school. It's an ideal way to make memories they will both remember.

Either way, I'll be going back to bed for a long nap by mid-morning. I'll get up in time to do the second exchange. Not sure I'll eat anything for lunch. I've been feeling nauseated since morning. That's pretty usual too.

I get up in time to finish exchange number two by 2.30pm. Time enough to go do the school pick-up run. It might not seem much, but I look forward to the school run. The days when I was well and running up and down the hospital wards managing multitudes of patients seem a lifetime away, like a different person. I'm pleased if I get to the school gates or the supermarket now-a-days.

Exchange number three dictates dinner time. If I can get one in before the kids' story and bedtime, then dinner can start once they're down. If not, then after their lights go out, I turn the light on by myself in my little dialysis room, and do the third exchange. It would be 9pm before I can start to think about dinner then. I have to cook, as only I know what, if anything, I’ll be able to stomach that night.

Finally, a chance to sit down with my wife and chill together. A final exchange before midnight ends my day. 6,704 exchanges down.

Proud moment: Simon graduates in his college robes

People ask how things would change if I got a transplant. Unfortunately, I know professionally that it isn't a cure, and it isn't permanent. But I would be a different man, a new father and husband. As far removed from the guy who fights through every day now as that well young man who worked in the hospitals and studied for post-graduate exams is.

A successful kidney transplant would cure the fatigue. It’s hard to describe the tiredness that kidney failure creates. I’ve worked 100+ hours weeks, whole weekends with only a couple of hours sleep. It isn’t like that; it’s worse. No amount of sleeping makes it better.

You may have heard of ‘spoonies’. Someone with a chronic illness describes how life is; one has a finite amount of spoons, and every time you do something you use up one of those spoons. Getting out of bed might be one or two spoons spent, on a good day, or twenty on a bad day. Making a meal might cost a couple of spoons, taking the kids to school is a few more.

In kidney failure, I may start the day with just a handful of spoons, or a dozen or more. And I can’t predict from the day before just how many there will be. It makes planning very difficult. We’ve stopped having people over for dinner, or going out with others, as I’m fed up with breaking commitments.

I’ve learnt to cope with this, and it has made me more spontaneous. If I am feeling up to taking the kids to the park opposite one afternoon, then we’ll jump up and go. It’ll end in me being tired out after a little while, but it’s better than nothing.

The kidneys do much more than filter out toxins from the blood; they maintain the levels of red blood cells, so being anaemic comes with the territory too. That adds to the fatigue, makes one breathless.

Without the kidneys to balance phosphate and calcium, bone metabolism is abnormal. Bones weaken, and blood vessels get abnormally hardened.

I find the hardest thing to describe is the ‘brain fog’ that the toxic build up in the blood creates. There’s a mental slowing and loss of mental agility that I miss more than the physical tiredness. I have tried to liken it to being in one of those massive, multi-layered space-walk suits astronauts wear. The suits are so cumbersome and restrictive that they spend years retraining to do the simplest things, like using a screwdriver. It’s a bit like that, having to re-learn how to listen to one’s body again, to do the most routine things. Mentally, it’s like watching the world go by through a thick space helmet that muffles everything. A mental detachment, slowness, a lack of immediacy that would be most unreal and disturbing if one was necessarily simultaneously already detached from it. A bit like watching one’s own life going on from outside, being only able to control it remotely by relay. Not a good description I know, but it’s the weirdest feeling and most difficult to put across to someone else.

Loving: Simon and family smile for the camera

What would I do if I got a working kidney again? I don’t know, to be honest, because I wouldn’t be the person I am right now anymore. A world of opportunities would open up again. Just being free from dialysis four times a day is currently unimaginable. I remember telling friends after my first transplant that ‘I felt 15 again’. I meant it too. I felt alert and energetic, and optimistic and hopeful like a youth too. I don’t know what exactly I would do, but I know I would be able to do something, and even have a choice of what to do, instead of fighting everyday just to try to stay here with my family. I know friends who have been fortunate enough to have had kidney transplants, and some are literally running up hills now. That’s very encouraging.

I could not tell someone to give their tissues and organs after death. It has to be one’s own decision. I could tell you that the organs alone could save or transform up to 9 lives, and along with tissue, transform the lives of 50 people, not including advances from medical research. I could tell you that ethnic minorities are underrepresented, making tissue matches for those patients less likely. I could tell you that there are just under 7,000 patients waiting for organs right now, the huge majority of them kidney patients, but also heart, lung, pancreas, liver and small bowel. I could tell you that three patients on the list die every day in need of a new organ. I could tell you that the list will only go on to get bigger as diabetes and other conditions increase.

I will tell you that it’s easy to register as a organ donor, so that in the event of one dying in the very specific suitable way, one can go on to save several lives.

To join the NHS Organ Donor Register please go to organdonation.nhs.uk or call 0300 123 23 23 – Now is the #TimeToSign.

NHS Blood and Transplant’s film ‘The Wait’ is being shown at Vue Cinemas Piccadilly on Friday 20 November from 7.30pm until 9:00pm. The public are invited to come along to watch some (or all) of Simon Howell’s day, captured on film. At 14 hours long, this promotional film to encourage more people to join the Organ Donor Register is an hour longer than the longest advertisement ever filmed**.